As mentioned at the end of the previous post, I was in a dark place after my 8-month-old son was diagnosed with cerebral palsy, and I questioned my ability to be a good mother to this special child. How could I be a good mother to my 3-year-old son, Rem? How could I help him be a good brother to his younger disabled brother? Will I be a good wife? Can I help their father be a good dad? Am I asking too much of myself? YES.

First grieve, then reprieve.

You may be asking yourself, “Why grieve for a child who is still living?” The answer: Grieving is for a loss, not just a loss of life. Hearing the diagnosis of cerebral palsy and then the prognosis of my son needing assistance the rest of his life with every Activity of Daily Living (ADL), was murder to my ears. It meant that he would never walk, run, play ball like other kids, brush his own teeth, bath himself, feed himself, take himself to the toilet, or jump in the lake. He will forever be dependent on other people to help him overcome the loss of abilities most of us take for granted. I was grieving the loss of those abilities.

I’m going to lean on Reality Therapy for a minute. I had a mental picture in my mind of how things were “supposed” to be. Hunter would run and play with his brother, get into sibling rivalry fights, steal each others’ girlfriends, compete in sports, take the car without asking, etc. My mental picture had to change.

I replaced that mental image with what was right in front of me. A baby whose head had to be supported at all times, a baby who cried constantly when it was too noisy, getting him to drink enough nutrients in order to thrive and be healthy regardless of the disability. The rest of what was in front of me was the unknown. But this I did know:

The brightest and purest reality was that Hunter was a little boy first, he was a little boy with a disability second.

This reality mental image didn’t happen overnight. It took time, a few months, but while I was still feeling depressed, I had Rem to take care of, a house to run, you know, responsibilities. And during my period of grieving, the high-risk clinic set Hunter up with physical and occupational therapy, nutritional therapy, and doctor follow-ups. It was clear to me Hunter could thrive and to accomplish that he needed encouragement, love, support, and yes, a bit of pushing. As Patrick Swayze said in Dirty Dancing, “Nobody puts Baby in a corner.”

After several therapy sessions it was evident Hunter was enjoying himself. I was enjoying myself, too. I learned how to do exercises with Hunter, which to him, was play time. He giggled, I laughed. He was a little boy first, a little boy with a disability second.

In the process of engaging with Hunter, hand-over-fist I crawled out of the dark place. I didn’t want Rem to be dragged down by negative forces, nor did I want Hunter to feel burdened because he was different. At physical therapy a woman and her young son, about the age and ability of Hunter, followed our appointment. For months I’d greet her and smile and was surprised by her sullen demeanor. She appeared to have just cried or looked about to cry. Her baby was sullen as well. The woman continued to talk about how sad it was that her husband would never play basketball with their son. I felt empathy for this woman who, after several months, still carried the mental picture of her son doing “normal” activities.

I believe that her extended sullen demeanor directly affected her baby. Babies can sense when you’re depressed or happy and I believe it will reflect in his own mood. Her grieving process lasted longer than mine, and grieving will vary depending on the individuals involved. After crying for hours on the kitchen floor directly after the diagnosis, I needed to – as my Mother always said – get with the program. I did not wants to lie on the kitchen floor the rest of my life.

It’s okay to grieve for your child’s loss because it’s your loss too.

If you feel stuck grieving for several months, you may benefit from outside help.

You’ll need a different mental picture of your special child to get through the grieving process.

You may have asked yourself the same questions I did about being a good mother to a special child, to your other child(ren), being a good wife, etc. As the process advanced, the answers came to me. I was going to be the kind of mother I had intended to be regardless of a “diagnosis” and a “prognosis.” They’re just words, really. When Hunter was little, it was impossible to know how or “if” he would progress. That unknown territory was the scariest for me, but it was also like piecing together a puzzle, which I enjoyed doing.

In the next post I’ll discuss skills to combat depression that may interfere with the grieving process.

All the best,

Dana

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About Dana J Dewey

I was a slow learner as a child and to overcome my fear of school, as an adult I attended many of them. I ended up with a master of science degree in counseling psychology and I'm a licensed mental health counselor who is passionate about mental health. This blog is about life, joy, and the pursuit of good mental health, and the eclectic way in which it's achieved. I'm blogging a memoir, The Tail Gunner's Daughter, and later, Parent-Able: Seven Strategies for Raising a Physically Disabled Child Without Going Insane.

3 Responses to Grieving the diagnosis

Yes, I’m guessing a lot of people relate to that. That is why I started the Parent-Able site – to share 23 years of raising and caring for him. After 23 years the doctor’s words are still fresh in my ears and mind. By the way, you’re a special Mom!
Cheers,
Dana